Claustrophobic but Joyous and Free

I just watched an exuberant, freeing kind of Youtube video and thought I’d share it here for anyone feeling, perhaps, a little suffocated today…(by anything really, it doesn’t have to be lack of air. For instance I’ve felt suffocated by things as various as failure, fat, saunas, speaking up in front of strangers, and a hyper-inflated sense of responsibility. Really, so many things can suck up available oxygen.)

Fear is usually involved, at least for me.

Well, here’s an example of people facing into some big fear and people helping them do it. The Marine Discovery Dive is an event out of Malaysia that takes a group of physically disabled people scuba diving every year in order to free them from the usual limits placed on not only their bodies, but their minds and spirits as well (which, let’s face it, is where the most severe disabling usually takes place.) There’s a lot, a LOT, of joy in this. Watch and breathe:

It reminds me of a hospice patient I once worked with who was dying from a disease similar to ALS (I can’t remember the name now) which was relentlessly shutting down his autonomic nervous system. As he felt it progressing, and knowing full well where it was headed…he was a highly intelligent man…he sometimes felt like he was being slowly buried alive inside his own body. Not a pleasant sensation by all accounts.

Well, we had a counselor working for the hospice at the time who’d been learning about different kinds of “energy” work for lack of a better term. In any case, she tried it out on this patient and lo and behold, it actually helped alleviate the growing sense of claustrophobia he was struggling with so, needless to say, he became very attached to the treatment.

Fast forward a couple months and said counselor, preparing to leave for two weeks of vacation, asked me if I’d take over while she was gone. I was reluctant because, frankly, what was involved felt a little strange and embarrassing to me. However, when the patient started adding his own earnest entreaties…well, who can say no in the face of that kind of raw need?

Which is how I found myself one afternoon standing over the body of said patient where he was reclining in…well…a recliner, eyes closed. I was waving my arms back and forth over him in the prescribed manner feeling very much like a five year old solemnly pretending to be an ocean tide. Awkward? Yes. Lame? Felt like it to me.

And yet, and yet. He responded to it in spite of my resistance. He gradually, visibly relaxed, the fear lines in his face smoothing, the tension in his body loosening to eventually disappear. There was a look of profound peace that settled over him and even I, Little Miss Judge-It-All, could eventually feel a kind of tactile, tangible silence in the room.

It wound up being a pretty profound experience for me (not that I remotely mattered at the time but, still, it was nice to think about afterwards.) The whole thing wound up wreaking havoc on a set of mental limits I was tenderly suckling without even realizing it, while simultaneously opening me up to the possibility of more possibilities. (Why in the world that seemed so threatening is a mystery, but there you have it.)

What I took away from that experience, and what I take away again from watching the blossoming transformation in the faces of the disabled divers in the video, is that much of the potential for real freedom and joy…the genuine article…lies inside our own minds. My patient’s physical disease didn’t go away but the way he was experiencing it completely changed for a little while. And neither did the disability of any of these divers go away and yet, they all seemed to feel liberated…transformed…in spite of the limits. Maybe it wasn’t a permanent transformation but it was certainly a start, and God only knows what a start can lead to. I’ve seen entire sidewalks…parking lots even…eventually overgrown from a single, tiny weed starting in a single, tiny crack.

So I know…I can feel it…that even though the people in this video are exploring frontiers (disability, like dying, is very much a frontier to me) that I haven’t visited yet myself, it doesn’t mean the things they’re learning aren’t supremely important for me to learn too.

Which is why I write it down here under the guise of sharing it with you. Really, I suspect I’m just archiving it where I can find it again, but if you get something out of it, too? All the better. Have at it, my friends. I think there’s more than enough to go around.

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The Fisher King Goes Fishing

A friend of mine was once a vital, physically dynamic. backpacking, canoeing, outdoors enthusiast and passionate, social worker powerhouse.  Then she contracted West Nile virus during one of its earliest appearances in the West, collapsed overnight, and almost died from the severe neurological complications.  It was sobering, how a tiny virus can take down a strapping, healthy, wildly intelligent woman in her prime like that.  Somehow I had thought that only the young, old, and already compromised were vulnerable.

Fortunately, she survived and has been industriously working to rebuild a new life out of the ashes of devastating illness.  One of the biggest challenges has been trying to get to know who she is now as a result of all the neurological damage that took place.   Her mind is still as keen, curious, and active as ever, but tends to quickly overload and go smoky with any kind of strain.  And while she still loves the outdoors and continues to camp and hike a little, she walks a razors edge in terms of how much physical exertion she can pursue before her brain short circuits from the flood of brain chemicals released by fatigue and stress.

For a woman who largely defined herself by her independence, extraordinary mental acuity, and physical dynamism, the loss of self she’s experienced through illness has been profound and the continuing effort to redefine herself, grueling.  But she does it anyway…and inspires me  in the process.

We used to talk a lot about how hard it is to let go of who you once were, then try to rebuild a new life according to this other, lesser version you’ve turned into.  (At least that’s what it feels like in the beginning.)  I experienced something similar during my rapid descent into a long and severe depressive episode twenty years ago, an illness that effectively blew my old life to smithereens.  Like most people in our situation I, too, spent the first few years trying to first recover, then return to the old life I’d known.  It was only after it grew apparent that could never happen that I finally got on with the job of crafting a new life and a new identity to go along with it.

Any kind of major illness or injury can create this cycle of course, but there was a unique challenge we both faced in that we still looked the same from the outside.  All of our injuries are invisible at first glance, which makes our inability to perform certain, standard tasks very confusing for others.  And when we frequently failed to meet the seemingly normal, reasonable expectations of people it wound up creating friction in our relationships with them, a fact that then made it even harder to figure out and accept who we had become.

But time is a great healer and has been slowly revealing that we didn’t actually become lesser people after all, just different ones.  Our identities have changed substantially–who we are and what we can do in relation to the world around us–but it turns out our essential selves haven’t really changed at all.  We still love the same things we’ve always loved, with the same depth.  We still strive to give, serve, behave, and belong in a way that nourishes the greater world.  We’re still just as committed to the happiness and welfare of our children and husbands, doing whatever we can to support them.  And we continue to try and pass along the little tidbits of light, inspiration, and meaning we uncover while sorting through the various piles of debris that now litter our lives.

Today, she sent me the following three minute video and it reminded me again of what an extraordinary gift and accomplishment it is to survive in this world at all.  Its many and formidable hardships aside, life is still pretty magnificent and I do so love getting to participate in it, for however long it lasts.

This is footage of an osprey fishing from the BBC archives.  First sequence: he catches half a dozen fish in one strike.  Second sequence: he dives underwater and plunges talons into a flat fish resting on the bottom.  Third sequence: he captures a huge fish that looks as if it weighs more than he does.  (How they get this kind of footage is beyond me but they do.  Pretty brilliant.)

copyright Dia Osborn 2012

When Not Quitting Is The Miracle

Thought I’d post a quick update on my mini-triathlon quest.  There’s good news.  Progress is now detectable.  The trainer who adopted me at the YMCA is terrific, enthusiastic, and more importantly has learned to scale back her ambitions where I’m concerned.  Her early training schedule with six days of alternating weights, running, bicycling, swimming, and stretching with a seventh of optional hiking has been revamped to three days of weights and running.

And I’m consistently hitting two of them!  To the outside observer that may not sound like much…and the trained athlete of bygone days in my head would emphatically agree…but to the shell shocked depressive inside who’s spent the last six years floundering between seclusion and creeping paralysis, two days of successful sports training is definitely cause for celebration!

Honestly, I’m a little breathless at my biggest achievement to date…I haven’t quit.  It hasn’t been easy.  This whole thing has felt a lot like sailing along a treacherous coastline littered with underwater rocks.  Each time I start to pick up speed, working out two or three times in a row on schedule, I think Aha!  NOW I’ve got it.  Now I can unfurl the sails and really fly! Then I hear that damn thud and scraping on my internal hull and suddenly, for the rest of the day, I can’t even leave the house.

Which means I have to keep starting all over again and it’s frustrating.  Early on these frequent stumbles really scared me because I thought if they kept up, they’d eventually make me stop.  But two months into the whole thing now and my confidence is starting to build.  I wonder if this is what it’s like for an athlete who suffers a big injury and has to learn how to perform all over again with a new and different body.  Only in my case, the injury was to my mind.  Everything I used to take for granted…simple emotional discipline, mental focus, and freedom from chronic fear and occasional panic…is kaput, so I’m having to learn a whole different set of mental skills and strengths to compensate for it.

It feels good though, even if it’s producing some additional anxiety.  The hardest thing by far is making myself go to the gym.  You may not know this but gyms are very social places.  Lots of active, purposeful, energetic people all striding and pumping and pulling on complicated, noisy, bewildering equipment.  It’s like a ten freeway interchange with heavy traffic flows and well-orchestrated on and off ramps.  Everyone else seems to know exactly what they’re doing and then here I am, an outed hermit dressed in frumpy, old activewear, newly sucked out of my hole and doing my best not to trip and fall off the treadmill (yes…I’ve done it once so far) or hold up the line of nice but impatient people waiting to work on the weight machine I’m currently tangled in.

So much for dignity.  But in spite of everything I’m actually starting to feel individual muscles once in a while instead of the more generalized trembling and collapse I started out with, and the length of time I can run without walking is definitely growing.  I even tried my hand at running on the track yesterday, instead of the treadmill, and I’m happy to report that I didn’t trip, run into anybody, or attract undue attention with all the extraordinary bouncing going on around my chest, hips, and behind.  (The complex physics involved with fat on a jogging person is really something to experience firsthand, let me tell you.) I’m still trying to get a handle on the whole fashion element involved and have yet to figure out how all these women are wearing what amounts to tights with no…I repeat no…visible signs of underwear.  Surreptitious observation in the locker room has only revealed one thong so far, so something else must be going on.  The anthropologist in me is intrigued.

I’ll keep you posted.

In the meantime, if you’ve got an extra ten minutes, here’s an ESPN awards video telling the stories of two, physically-disabled athletes who have been changing the world.  Jim MacLaren, who endured two catastrophic accidents that successively stripped him of his athletic gifts, but who went on to make his miracles anyway, died in August last year.  But his inspiring legacy continues to grow through extraordinary disabled athletes like Emmanuel Ofosu Yeboa of Ghana.  Seriously, if you want something that both puts life in perspective and inspires you to keep hoping, watch this.

Because sometimes just not quitting is the most amazing miracle of all.

copyright Dia Osborn 2011

Why The Disabled Are Worried About It

In last Friday’s post I mentioned that, much to my surprise, the disabled seem to have good reason for worrying about assisted dying/assisted suicide (I’m going to shorten it to AD/AS here…) legislation being passed.  In this post I’d like to take a look at why.

It started with the whole Death Panels phenomenon.  After I wrote  Christmas Trees and Death Panels: How Fear Sets A Snare a few weeks ago, a thought kept nagging at me.  When Sarah Palin first threw out that now infamous term, she claimed that the government was planning to set up medical boards to decide whether her child with Down Syndrome would be allowed to live or not.  I initially thought it was a (pretty brilliant) piece of political misdirection and dismissed it.  (Admittedly, my opinion of politicians is at an all time low.  The bias runs deep.  If their lips are moving, I doubt it.)  Nonetheless, the claim reminded me of different accounts I’ve read over the years of the historical treatment of the physically disabled and mentally ill, and as I recalled some of those horror stories I began to wonder if there might not still be some deep psychic scars hanging around in our group subconscious.  It wouldn’t be unusual.  Deep fears based in old realities do tend to die slowly.  Could some element of genuine fear also be coloring Ms. Palin’s political ploys?  And was it an echo of that same fear that inspired such an overwhelming response in the American public?

(Who would have thought that my old fascination with mental asylums, body snatching, and medical experimentation on the terminally ill might eventually offer constructive insight into the deep, subconscious fears about disability and dying that are still active today?  Go figure.  Let that be a lesson to follow one’s passion, however odd it seems. )

In terms of their treatment at the hands of a larger society, historically the disabled have often drawn the short, shorter, and shortest straws.  Some of the accounts are heinous.  For example, in the Victorian era, in the early days of asylums and workhouses the disabled (both physically and mentally) were often segregated and abandoned in abysmal conditions; shackled in dungeons with no light, clothing, beds, or heat,  and left to languish in their own filth. In addition, because there was no meaningful legal protection, they were sometimes targeted for questionable medical experimentation by unscrupulous doctors.  Not to mention that, when it came to committing someone for mental illness, the definition of insanity was…well…insane.  Families could commit just about anyone to an asylum for reasons as simple as disobedience (in women) and unruliness (in children.)

It was a traumatic age to rank among society’s most vulnerable and, while conditions have improved dramatically in the western world over the last century (not always so rosy yet in pockets of the developing world though,) the old horror stories have nonetheless carried forward to today.  There are still families handing down tales of not-so-distant ancestors who were locked up in these places, and who doesn’t get a delicious chill running down their spine at the use of old asylums as settings in classic, horror movies?

Kings Park Psychiatric Center, New York (Building 93)

These stories from bygone days are still lurking deep in our group unconscious and contributing to the fear and stereotypes about disability and its treatment that exist today.   But up until recently I assumed those fears were dated and irrelevant.  Imagine my surprise then, to discover there are still compelling reasons for the disabled to not only fear segregation and discrimination, but possibly euthanasia as well.

After assuming that Ms. Palin’s stated fear for her son was not entirely political, I dug a little deeper.  I did a quick search using terms like disabled, fear, and assisted suicide and found this publication put out by RADAR: The Disability Network in the U.K.  It  addresses concerns about proposed legislation for assisted dying in the terminally ill and…please, let me first just say that in a media world as full of hype, spin, and misrepresentation of the facts as ours is currently, this little bulletin is a treasure.  It’s heartfelt and passionate, but still somehow manages to be respectful, and I read it a few times just to bask in that little miracle of miracles.

But aside from that, one piece of information I learned there shocked me.  It turns out the disabled have a right to worry about legislation sanctioning AD/AS.

Included in RADAR’s publication is a case study concerning a woman named Jane Campbell, diagnosed at birth with spinal muscular atrophy and not expected to survive her first year.  Best I can figure, at the time of this publication she was about forty and, in spite of extensive disability, living a dynamic, happy, satisfying life as a national advocate for the disabled.  However, during a hospitalization for severe pneumonia in 2003 she encountered an unconscious stereotype held by members of the medical staff that could potentially have proven fatal to her.  Her experience is important because it crystallizes some of the very real danger that AD/AS poses for the disabled, and I think it’s something that all of us healthy, strapping people need to consider carefully.

Evidently, while in the hospital she was approached by two different members of the medical staff overseeing her care who told her that, in the case of respiratory failure, they assumed she wouldn’t want to be resuscitated with a ventilator.  She was at first surprised, and then alarmed, because they didn’t seem to believe her when she insisted that, no, she wanted to continue to live very much, even on a ventilator.  Her husband eventually had to race home and collect photos and other factual evidence to convince them that in spite of her disability, she did indeed enjoy a very high quality of life.  Unlike an equally young but non-disabled patient, Jane found herself in the position of needing to prove that she still had every reason to want to live.

I imagine it was terrifying for her.  Medical personnel often have to make tough calls that influence whether a patient will survive a crisis, and if they believe that the patient doesn’t want to survive it will almost certainly influence their decisions.  Jane was confronted with medical professionals who, because of unexamined stereotypes about her quality of life, automatically assumed that she’d prefer to die.  More frightening for her was the fact that these stereotypes acted upon them so powerfully they continued to doubt her, even after she initially told them it wasn’t true.

Now some might suspect Jane was projecting her own fears onto the staff.  I might have too, except that I instantly recognized the kind of situation described because I was in it once myself, only I was on the medical side.  When Maggie, a woman who’d been left as a quadriplegic by polio sixty years earlier, was first referred to our hospice with terminal cancer, I was laboring under the same flawed assumption that she must be relieved.  When I first entered her home I thought surely she must be looking forward to her long suffering coming to an end.

Nothing could have been farther from the truth.

I found a woman devastated by the news.  She loved her life and for good reason.  Surrounded by a devoted, supportive husband, children she loved, grandchildren she adored, and a wide network of extended family and friends, she had at various times produced an educational TV show and managed a branch of the state tax commission for more than a decade.  She was sharp, beautiful, disciplined, optimistic, graceful, and dynamic…and she was not, I repeat not, ready to die.

It was a real eye opener for me.  The reason stereotypes are so damn successful is because, without any real life experience to refute them, they feel true.  It isn’t until one finally runs aground on the rocks of some contrary evidence that they crack open, revealing the blind assumptions they’re based on and allowing us to finally begin to question them.  Maggie was the rock that split my hull.  She was severely disabled but, where her desire to live was concerned, that was totally irrelevant.  While her husband told me after she died that of course she was relieved to escape the limitations placed on her body, that in no way translated into meaning that she wanted to die. Evidently, wanting to be free of a disability and wanting to be free of  life are not the same thing.

Go figure.

Now, an important question to ask is, does any of this really matter to those of us who are not disabled?  Clearly, this stereotype is potentially dangerous for someone who is but for someone who’s not, other than arousing our deep humanitarian instincts, is it pertinent?  Will it ever affect us?  Do we have any skin in this game?

You bet.

Here’s an important point to keep in mind; eventually anyone who doesn’t die instantly is going to experience what it’s like to be disabled. Because the dying are a subset of the disabled. When we begin our final journey we all enter the world of steadily decreasing ability and, to varying degrees and for however long it lasts, we each get to feel what it’s like to become helpless, dependent, weakened, and vulnerable.  And when that happens all those non-pertinent stereotypes about disability flapping around are going to catch our scent and come circling, and you better believe they’ll influence the people making critical decisions for our lives.  It won’t matter which side of the AD/AS argument any one of us falls on, whether we’ll be among those who want to live but, like Jane and Maggie, are cared for by people who don’t believe us, or whether we’ll be among those who want to die but who are cared for by people who think we’re no longer competent to decide.  Either way, left unaddressed any stereotypes about disability will almost certainly wield power over our self sovereignty.

Now you might think that this alone is a good enough reason to look more closely at the actual wording of any given legislation for AD/AS, and to have some in-depth, follow-up discussion.  But Wait! (I say like an infomercial for a new, blender/chopper/shredder/slicer kitchen appliance that one just can’t live without…) There’s more!

But…it’ll have to wait until another post.  I’ve already gone way too long already.  Next Friday, I’d like to take a look at the possibility that the blind assumption the disabled don’t have any real quality of life may also be a prime factor influencing why some people choose assisted dying/assisted suicide in the first place.

copyright 2010 Dia Osborn

Them Worms, Them Worms

I was planning on writing about Maggie Full of Grace and her life after polio in this post but have been characteristically sidetracked.  (It’s not hard to do.)  You see, I can never think of Maggie without thinking about her disability, and disability as a whole has blossomed into a topic that’s curious to me.

Probably because I was so oblivious to it in my youth.  I had little exposure to the disabled kids back then because long, long ago and far, far away, “special needs” kids rode on “special” buses to “special” schools and were referred to, in the brainless vernacular widely employed in those days, as retards and cripples.

(Anyone who thinks the good old days were the Golden Age and that the world is now morally deteriorating should cast their mind back to some of the common cruelties of yesteryear.  Trust me.  We weren’t nearly as golden as we like to remember.)

I was in my forties and working with hospice before I finally had my first, up close, and sustained interaction with a person of disability.   By then I had dutifully learned a newer, kinder vernacular based on an upwardly evolving world view.  I’d cleaned up the ugly, childhood slang, learned to speak respectfully about the disabled, and sincerely believed I was now wise, open minded, and prejudice-free.

Aaaah…but those worms within.

I soon discovered that, while my surface language had improved, it was just camouflage.  The old, subconscious memes of childhood were still very much alive and skulking around in face paint, just underneath.  Has anyone else ever experienced this?  Discovered that what you want  to believe and what you were once conditioned to believe just don’t synch?  It’s kind of weird how old biases can continue to operate without our even knowing it.

I found that a lot of what came out of my mouth was condescending.  Patronizing.  Even when I tried not to I’d sometimes fall back into talking to people as if they were stupid, childish, or deaf.  It was horrifying.  At times I wanted the earth to open up and swallow me.  I wanted to clap my hands over my mouth, drag me outside, and beat me.   What was wrong with me?  Why couldn’t I stop?  Was I really, in spite of all my best efforts and a deep and genuine desire not to be one, a bigot?

It turns out, no.  (Thank god.)  I was unfamiliar, inexperienced, and badly educated, yes, but fortunately these are all things that can be rectified.  The people I worked with were surprisingly generous with me, seeing through my awkwardness to the sincerity that lay just underneath, and given enough time I finally discovered that they weren’t even disabled people at all.  They were people.  Sans label.  Go figure.

If you get a chance check these out.  This a YouTube video of Aaron Fotheringham cruising around in a skateboard park in his wheelchair.  And this one is a video of The China Disabled People’s Performing Art Troupe dancing the Thousand Hand Guanyin.  (All the dancers are deaf.)  Besides being outrageously entertaining I’ve found that both these videos are helpful for blowing the creepy, old world view about disabilities right out of the water.

I look at my kids and their friends and it’s obvious they won’t have to struggle with a lot of the stereotypes that saturated me earlier on.  I can’t begin to tell you how grateful I am for that.  I know that doesn’t mean the Great Work is finished by any means.  No sirree bob.  There’s still a lot of work to do before we’re all seeing and accepting one another for who we really are.  But still, at least some of the worms are dying and I think it’s safe to celebrate the small wins.

copyright 2010 Dia Osborn